title: Psychosocial impact of hidradenitis suppurativa: a qualitative study.
abstract: Hidradenitis suppurativa influences patients' lives in many ways. It is therefore necessary to focus on the effects of the disease on daily life in order better to define patient-related outcomes in hidradenitis suppurativa studies. Interviews were conducted with 12 patients with hidradenitis suppurativa. Initial single interviews were followed by semi-structured and structured qualitative focus group interviews in order to improve the richness of the data and obtain in-depth understanding of the impact of the topics. Important topics were found to relate to aspects of interpersonal contact, especially in relation to smell and appearance, various emotional reactions, and feelings of lack of control. It was found that hidradenitis suppurativa has a great emotional impact on patients and promotes isolation due to fear of stigmatization. Shame and irritation are frequent and relate to smell, scars, itching and pain. Quality of life is adversely affected and professional support is needed.
authors.affiliation: Department of Dermatology, Roskilde Hospital, Faculty of Health Sciences, University of Copenhagen, Denmark. ses@regionsjaelland.dk
authors.forename: Solveig
authors.initials: S
authors.lastname: Esmann
authors.forename: Gregor B E
authors.initials: GB
authors.lastname: Jemec
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000328:Adult; D001828:Body Image; D002321:Career Choice; D003071:Cognition; D003142:Communication; D017281:Cost of Illness; D003718:Denmark; D004644:Emotions; D005260:Female; D017497:Hidradenitis Suppurativa / Q000150:complications / Q000523:psychology* / Q000628:therapy; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D018582:Sick Leave; D012903:Smell; D012928:Social Desirability; D012934:Social Isolation; D013240:Stereotyping; D013609:Taboo